Monday, August 8, 2011

Progress?

I want to start this post by dedicating it to one of my friends very special sister. It was her yahrtzeit (anniversary of her passing) last Shabbos. Like my Rozie she was born with Down syndrome , but unlike Rozie who has been blessed to be born in a a time where understanding and acceptance is growing and improving. She was born in the 1950s, and was immediately put in a home for children with special needs. This was common practice in those times. Even though my friend did not know her sister well like Rozie's brothers know her, i want to take this time to honor her sister and may her lofty Neshama have an Aliyah, and we should all meet again very soon when Moshiach comes.
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This summer has been the summer of trips. Last summer i was paralyzed by my new diagnosis and wasn't quite sure how to continue my summer, but this year it is a different story. I want to tour the world, ok maybe just places within an hour drive, but even so the fire has been lit.
We have gone to tour a potato chip factory, the National Dental Museum, farms, beaches, and have many more trips to come including some beach camping, whooohooo!
I love taking my children to new places and watching their little faces light up with excitement as they learn and see new things. This is especially exciting for my Rozie because so much is new for her.
I usually quickly unbuckle her little straps and lift her out of the stroller to help give her a better view of the excitement. As i lift my precious baby into my arms i can see the looks. Sometimes its a look of pity, sometimes its a look of fear, other times it is a connection, but there is always a look.
I have gotten use to this i know its going to happen and honestly i don't care anymore.It is so much more important to me that Rozie gets a good view of the potato slicing ,dicing, and salting machine, then worry about wandering eyes.
I have grown a thick layer of skin, kind of a reflective field that special needs parent have to grow, and i hear it gets stronger and stronger. I reflect the stares and i can zap the looks, but i still struggle with the words. Every once in awhile someone will make a little comment or start up a conversation with me, and my reflectors for some reason do not work as well.
A woman came up to me the other day and asked how old Rozie was, and i said two. She then offered me the most surprised look , with a slack jaw and all and announced in loud words "TWO, how can she be two she is so tiny"? This is not an uncommon conversation for me and usually at this point i grab my Dovie,who likes to hold strong in the 5% on the growth charts in height and say "look at my Dovie he is almost 5 and still wears toddler shoes". This often deflects from Rozie ( poor Dovie)."We are just a small family" i usually say. This often keeps the comments at bay and the subject is changed. This woman was not easily deflected and went right back to Rozie and commented again about how little she is ( like i don't know lady).
She then proceeded to tell me how lucky i was because she will not hit her terrible twos. I looked at her and said "do you think her size has anything to do with behavior and hitting terrible and not so terrible stages"? "Just because she is small she is still two , and trust me she acts like it". This lovely lady looked at me like i was speaking a foreign language and walked away. This unfortunately was not my first naive conversation and i have heard words like slow, the r-word, downsy ( whatever that means) ,downs baby, and many other not so nice words to describe my daughter. My reflector suit some days just gets worn down.
I stared thinking about the stupid things people said to me and i realized i probably thought and often would of said the same tings, because i use to be just as naive. I really never had much experience with anyone with Down syndrome or any other type of special needs.I know i often had empathy , but not understanding. I was smart enough to keep my mouth shut when i was put in a situation, but i know my mind was thinking the dumbest stuff. I decided to make a list , kind of a Do's and Dont's of the special needs world. This is mostly Down syndrome related( because that is what i know) but im sure a lot of it can be applied to most children and their families with special needs.
1. We like child first language, and i will correct you so please don't be offended. A baby with Down syndrome, not a Down syndrome baby, i hate that. And even worse a Downs baby. Notice Down is capitalized and syndrome is not . That is because Down was the name of the physician that identified Trisomy 21. My baby does not belong to him so please don't call her Downs, Downsy, or anything like it. That one really gets me.
2. Please ask kind and considerate questions without assumptions. If you are curious about something please ask , don't just stare. Staring is rude, didn't your mommy teach you that. If you want to know why my daughter isn't walking , ask me. I'll happily explain. Please don't make assumptions and approach me that way "Oh i see your daughter cant walk, People with Down syndrome don't walk until they are adults , right"? These assumptions wear me down and cause me to say things that i am often not proud of. Please ask but don't assume.
3. Again just ask me . I will answer all your questions in the best way i can. I actually love answering questions about Down syndrome and will probably talk your head off with statistics and information. Again questions are great, assumptions are painful.
4. Lastly please please don't ever use the R-word to describe my daughter, or any other child with special needs or cognitive differences.I don't care if it is a joke or being used in a medical term, it hurts and causes the special needs community great amounts of pain to hear this word. Words like differences are wonderful, differences are appreciated, but retardation, I'm not interested in that word.
I hope everyone has an easy and meaningful fast tomorrow and together with Ahavas Yisroel we find respect for people in this world no matter their ability. Moshiach Now!
If you are interested in reading a fictional book about a baby born with Down syndrome in the 1950s i highly recommend the book a "Memory Keeper's Daughter" this book was thought provoking and moving. You can get it here

17 comments
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Once, when I lived in NZ, I saw this adorable little girl at a conference. I wanted to take a picture of her. As I walked over to ask the mother if I could (because I always ask to take pictures of children), I noticed there was something different about the child. Then I realized it, the child couldn't use her hands. There was something going on with them. I was suddenly terrified to ask the mother if I could take a picture. I was afraid the mother would think I was taking a picture of her daughter because of her hands. I ended up being brave enough to ask, and the mother was gracious enough to let me take a picture of her precious little toddler. I sat and played with her. She had very very dexterous toes : )All that to say, thank you for the post, because I don't like being a rude stranger.

Absolutely beautiful. I am tearing up. You know, it just dawned on me in the past weeks that some people might look at me with Bridgie and feel sad or sorry. I don't like this thought. I don't really care what people think of me or my kids but don't feel sad or sorry for me, because trust me I don't feel sad or sorry for you or anyone else. I may be sympathetic towards your current plight or want to reach out and offer help in your time of need. But I will never pity anyone (except for fools, of course). I love your little Rozie and she is brilliant, like her mama.

my husband's uncle had down syndrome and was born in I believe the late 1930's. He was in a home for most of his life. luckily my father in law and another brother of theirs did form a close relationship with him. His yahrzeit was also recently - he lived quite a long life and I was honored to meet him - my middle child is actually named after him. thanks for writing this blog, it is important for people to understand how you feel when they say things to you and hopefully people will learn more about how to talk to moms of kids with disabilities.

I am already getting used to the "yep, she's five months and she's little." Also, I felt like the staring stranger today, because I met a woman who was with her son with DS. He didn't have very strong features, though, and it took me a long time to get around to Down syndrome. Glad I started the talk though, I met a neighbor with chromosomes like Ellie :)

Rozie is a total doll.... And I'm sure a "terrible two" as well! All three of your kids are beautiful, and I know you are (rightfully) so proud!

The camp that I work at has a population where there usually aren't any children with Downs syndrome, but this summer there was one... and let me tell you, for an eight year old, she had the personality of a whole class! She was literally a star and her funny, mischievous and talented self shone brightly.I read your posts and cannot fathom the people you are describing who see your daughter as anything less than beautiful, and yes, different, just like we all are. Each time I look at your pictures (and they are mighty good) she takes my breath away. Every time.

Love the new design of the blog and love you with a special design of life full of bitachon and emunah YOu are so positiveThe list of dos and donts is fabulousI have agrandchild with down syndrome and often feel the staresI wish you could send this article into a magazine so more people could learn from it Its such an important message

It amazes me how people have the inability to use their brains or exercise any kind of sound judgment. Truly baffling. I could never imagine saying anything to Rozie or to you except to comment on how gorgeous she is. All of your kids, really. I used to work with adults with developmental disabilities- I learned a lot from them.

Thank you for sharing these strategies and tips. I wonder if everyone in your situation feels the same way? I have a nephew with CP (cerebral palsy) and I know my sister-in-law has said dislikes when people gawk and stare, but she also hates when they ask questions. She feels they are prying and getting into her personal business. Anyway, I appreciate your sharing these tips. It's hard to know the right thing to do. Thank you for your openness! Glad you're having a fun summer.

I LOVE this post. How is the walking coming along? I've been following your posts on Babycenter. Also have you considering joining the FB group www.facebook.com/stopdisabilityslurs yet? My goal is to have a huge grass roots organization that grows and joins forces to stop disability slurs. The word "disability slur" needs to become synonymous with "racial slur" "religious slur" and be not accepted anymore.

Our little girl had a cataract removed and now wears a contact lens and glasses with a bifocal, so we get a lot of stares and clueless questions when we go out. I will never understand why people always ask if the glasses are real....why would anyone in their right mind fight to teach a toddler to tolerate glasses if they didn't need them?!?

We also patch for part of the day. We now do it mostly at home or at preschool, where the other kids are used to it, but when we used to go to shul with her patched we got a lot of concerned kids asking about the 'boo boo on her eye' and if she even had an eye under there. One very concerned little girl ran to get her father, only to find we had taken the patch off in the meantime and there were clearly two eyes there.

Thankfully no one has been mean or overly rude, I can imagine how much worse it can be for you with so many people's misconceptions about the syndrome and people who have it....

I often wonder if it's better to have a child whose syndrome shows on the face or not.I get frustrated a lot because of the way people respond to my daughter's behavior. She isn't a brat, she has special needs. Just because she looks like she should be talking and not tantrumming, doesn't mean it is true.

Sometimes I wish that it showed on her face that she is different. That way we wouldn't get rude librarians screaming back at my daughter when she gets confused, can't sort her life out at the moment and starts to scream. I guarantee that if my daughter had DS this librarian would not scream and scare the living daylights out of her.

But now I see the flip side. No one ever looks at us twice, except during a tantrum.

Size might be in your favor, though. My daughter is tall, and when you see a 3 foot tall kid who looks typical and can't walk up or down steps or walk more than a block at a time, you get stares and questions as well.

Hi I'm Sheva Mother to three, and wife to one. I'm an Arizona girl now trying to figure out east coast winters. I'm in a constant juggling act of special needs parenting, surviving a chronic illness, and figuring it all out with bells on. Come join me on this roller coaster, but be warned I only ride with my hands up laughing and screaming the entire way.

Ive fought a good hard battle, but I have lost....winter has won. Its cold, its snowy, its rainy, its slushy, its icy, but it is here, so l...

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